Looking back at my father's death during my childhood, I recall the frustration of small town medicine: no specialists, and only occasional, mostly ineffective, visits from the local physician. I remember the courageous and dedicated behavior of my young mother as she attended to her husband in the last months of his life, and the simple, homemade methods she used to ease his discomfort. I recall, too, the anxiety in our home as my mother tried to respond to my father's unvoiced thoughts and anticipate his emotional needs. It was often difficult to tell whether he was gripped more by emotional suffering or physical misery. And during his quiet, reflective moments, he didn't reveal the degree to which he was accepting the inevitability of his death and mourning his losses. I know now that my mother was trying to read my father's grief.
Dying in America has changed a lot since then. Now we have advanced medical treatment and technology, sophisticated methods of pain control, and institutions and caregivers dedicated to the care of the terminally ill. The work of Kubler-Ross and others has illuminated the scope and depth of the dying process, bringing it into the public consciousness.
What has not changed is that family and friends still must struggle to understand and support the grief of their dying loved ones. Even though there are no reliable "how to" formulas, we do know something of the twists and turns the emotions take on the way to death. That knowledge can help us feel more comfortable about providing the assistance that is most needed.
A diagnosis of terminal illness generally sparks shock and disbelief, quickly followed by some form of denial. The dying person may reject the facts of her condition, the course the illness will likely take, or the prospect of death. In some cases, she will delay the acceptance of her illness by visiting numerous specialists, clinging to the hope that her prognosis is incorrect.
This denial -- unless prolonged or extreme -- will do no harm. In fact, it temporarily eases emotional pain by robbing the terminal illness of its full implications. Denial gives the dying person time to gather strength, and to gradually assimilate the punishing facts of her changed circumstance.
Anger, another buffer against painful anxiety and grief, can also play a prominent role in the earlier stages of a terminal illness. Rage, sarcasm, miserliness, jealousy, or accusations may be aimed at anything and anyone. The dying person may even be angry with herself for contributing to her own death by self-destructive behavior. She may try secretly to bargain with God, promising to change if only given a "second chance."
Whatever the intermediate steps are, the dying person ultimately confronts the all-encompassing grief of losing everything: control, competence, security, pleasures, and dreams.
It's essential to have open communication about these multiple losses. In a mistaken effort to protect one another, many families never mention the sorrow of the coming separation -- leaving the dying person to face departure alone and emotionally isolated.
This may be the result of the family conforming to the tone set by the dying one. In my father's case, his silence sometimes surely reflected despairing resignation. It was unclear which of his losses were the most difficult for him to accept. But it is unquestionable that having been a dynamic, warmly regarded person in the community, he wanted to feel that he was still himself, the same person who had been so admired. It is crucial to remember that the dying person needs to end his life believing that his highly individual identity has not been diminished by his physical deterioration. Be receptive as he mourns for the parts of his body that no longer function, but assure him that those losses do not equate to loss of self.
Encourage your loved one to voice regret and longing. Gently invite the feelings behind the facts. The response, for instance, to a sad, "I can't read any more," could be "I know it must be difficult to give up reading." Then you might ask about his earliest recollection of reading or his favorite book. Encourage your loved one to revisit pleasurable experiences from the past, to share them, and to say a bittersweet good-bye. The same approach helps with other losses, whether of things, goals, or people. Help the dying person to recall the joys and fulfillments of his life.
To ease the loneliness of confronting death, try for quiet conversation about your loved one's thoughts on what happens at death. Offer to read from material that supports her beliefs. And assure the dying person that she lives on through the lives of others -- children, family, friends -- or through contributions of time, talent or energy she has made during her lifetime. Whatever these are, be specific about them: the good deeds performed, the warm and nurturing home provided, the jokes told, the achievements at work, the influence on the lives of students, the pictures painted, the poems written -- the concrete legacy of a life.
Assist your loved one in leaving remembrances. Help with an audiotape or videotape, for instance, chronicling her life and projecting her ideals and hopes into the future. Help write letters to friends passing on memories, admiration or affection. And if there are unresolved estrangements, create opportunities for healing: She may simply need to say (or hear), "I love you," or "Thank you," or "I'm sorry," or "I needed you." Mutual acceptance of amends helps reduce the possibility of anxiety-ridden final weeks.
Throughout your effort to lessen the grief of your loved one, don't demand something of yourself you cannot give. Above all else, remember that your calm presence, your caring touch can serve as a powerful barrier against anguish, desolation, and despair. A dying person's desire for physical affection, touching, and handholding will usually intensify as the illness progresses. By simply being there, staying close, you're helping your loved one find his way.